When your LO changes their minds

Iffy49

First let me say hello, I am new in this group. But not new to caregiving. That’s another story…
This is about my sister is 91 and diagnosed as stage 4 with Alzheimer. She lives alone on the west coast. She still is quite intelligent, humorous and “with it” in terms of knowing friends and family and her long term memory is good. She doesn’t wander and she hasn’t lost words but twice in the last year she got lost when she went out on an errand and forgot where she was going. Both times she came home on her own. But these were the triggers for my sisters and brother, all of us in our 70’s and 80’s, to focus on her and try to think of solutions. I have 2 sisters who live in nearby state and we all had the idea that our older sister could go into an assisted living facility near them.

I came for a 3 month visit this year to see how she was and to help organize her life. Although I don’t live in the USA, I’m probably the most mobile of all my siblings. I can go on a moment’s notice.
My oldest sister is also hampered by being almost blind with macular degeneration, which also started late last year, The things she did to keep on tract, like writing reminders to herself, she can no longer do because she can barely write and she can’t see what she writes, and often can’t remember what she wrote.
She lives alone and has a wonderful apartment with a view over the bay. She can’t see it anymore but she loves it anyway.

She liked the facilities we visited but after we got home she said she would prefer to live, and die, in her apartment. She gave reasonable answers why she did not want to move and she accepted the idea that she would need help to stay in her home. But now that the care has started, originally only 3 days a week, she is wanting her privacy back. That’s not unreasonable

This coincided with her being put on Aricept, 5mg. At first she was tolerating it very well. But one day, out of the blue, she was tired, was not eating and said she would go into assisted living. This was a dramatic departure from her usually self. We informed her doctor who took her off the Aricept. We started to think about how to plan this. And we added another day for the aide.
Then just as quickly she returned to her old, positive self. But it happened again this week. She said she was “done with all this” and wanted to go to assisted living. She even told her doctor she was looking forward to going. But two days later, she is her happy, resilient self again and has no memory of what she said to the doctor. She wants to stay home, she accepts that the aide is now coming an extra day.

Me and my sibs are getting whiplash from her changing her mind. I think it is the Aricept, which doesn’t leave the system for a few months after stopping it.
She is still so sharp but, without memory, how can there be good judgement? How can we help her when she changes her mind so quickly? Will she stabilize when the Aricept is out of her system in a few months?
Long distance caregiving is hard because you only get glimpses of the person in calls or video calls. Made harder, because my glimpse may be different than what my other siblings see when they contact her.